Looking Back at 2010 with Brycen...Looking Forward to 2011

I cannot believe that 2011 is already here tomorrow! So much has happened in 2010 with our family and so much of it is positive.

When we started 2010, we were still so unsure about what the next steps were with Brycen and his treatment. We were unsure about who was really supporting us and who we could count on. As the year progressed, we became much more confident in our decisions with him and our life in general.

We started speech and occupational therapy in a clinic separate from the services school has for him. We decided to face our fears of trying medication with him for sleeping at night. We also faced a huge fear of most parents of children on the spectrum by moving across the state to a new town, new home, new school, new therapists, etc. Even though the move was a choice made by Mike's job/bosses, I really think it was in Brycen's best interests in so many ways.

Since we have moved, we have NOT endured one of those extreme meltdowns that used to last an hour or longer where we had to hold him down to prevent him from harming himself or breaking things. Of course we have had some pretty good temper tantrums, but nothing to the extent that we know it can be.

Overall, I feel like we have so much more support from the new school, being closer to our family, and from the new store that Mike works at. We loved the therapists at both places, but I even feel more connected to the clinic here with all the "extras" they have been teaching us with Brycen such as the brushing therapy and the introduction of the Go-Talk device.

Our new doctor has been very supportive in helping us find a psychiatrist to see Brycen in January that travels to the area to prevent us from having to drive too far. We have the Genetics testing lined up for February with U of I. I just really feel like we have made so much more progress in understanding what our options are and what we are ready to try.

I also wanted to update everybody on the status of our decision for the communication device. We have been discussing devices for at least a year and were originally looking into much simpler devices than what we ended up choosing. The stress that I was having was not over the question of whether Brycen is ready for a more high-tech device than the Go-Talk or using just PECS...but over the decision on if I was choosing the best device for him that needs to last him at least 5 years due to funding purposes. Of course, every parent dreams that in 5 years their non-verbal child will be talking and communicating without the need for a device, but we also want to be realistic and we know that even if he is verbalizing more at that time, he will probably not be able to have functional communication and will still rely on a device for many years to come. The reality of all of this just hit me hard the other day and I apologize if it seemed to give the wrong idea to people. We KNOW Brycen's ready for a device...we know the limited funding we have available and how long it lasts...and we know that if we don't move forward, we risk more regression and only maintenance of his skills. We want to challenge him, but not overwhelm him. We don't want to just maintain his skills anymore. We want to see more progression if that possibility is there.

So many people have mentioned to me about staying positive about his outcome and to look at all the great things he can do. I'm trying to take all of that advice in and finally came to this conclusion: I'm sick of complaining about Brycen not being able to talk to me; I'm tired of wondering if we are doing all that we can for him; I'm frustrated with people thinking I am not positive about my son and his qualities. So instead of feeling sick, tired, and frustrated about the situation with the lack of communication, we are going to do something about it more than what we are already doing with the extra therapy outside of school. We can do this by getting a device for him that will let us be able to program it to a simple form like that Go-Talk, but also have capabilities to see him through independence with communication. Maybe he won't ever get to the point of using all of the features the device has...but I refuse to sit back and wonder for another year if we could have made more progress if we had just pushed him a little bit further.

Our final decision was the Alt-Chat as we loved how light it was, how easy to transport, how we can do the programming through our own PC and then load it to the device, the extra features it had, his reaction to the device when we showed it to him, etc. Once Mike and I came to this conclusion the other day, it was complete relief. Of course, we need to wait for the trial device to be sent to us which we can utilize for up to 4 weeks. Then we return the trial device with our "final" decision to the company and after getting an order from his doctor and from the speech therapist, as well as Medicaid approval, we then wait until his own device is sent to us. This could take a couple months so I am not anticipating starting this until at least March or April, but in the meantime, we will continue to expand on what we can with the Go-Talk at his therapy sessions.

We can only go forward. No more going back!! 2011, here we come!

Which one is right for Brycen???

I thought some decisions in the past were hard, but I think this is by far the most difficult decision we have ever had to make. While some people (including myself until recently) think all of this would probably be easy because all we want is for our son to be able to communicate with us, I am finding out it is so much more difficult than any other decision we have ever had to make for him!! Choosing to get him evaluated by an Autism team was easy, choosing to start speech and OT was easy, starting PECS was easy...ok, so none of this is really "easy" because it all comes with a lot of emotions, grieving, acceptance, educating, adjusting, etc. But all of these were just a given when it came to Brycen's diagnosis and since we live in small towns, we don't have options of various therapies so you take what you have available...and lucky for us that we have loved both of the places he has received his speech and OT.
Now we are making a decision that could either "make or break" his communication skills. The decision to start medications has been hard, but with medications, we can do more trial and error over time. With this device, the decision we make now has to be the right one for at least 5 years. It's almost like investing in a car or house...will it fit our needs, does it have enough room to grow with us, will it be durable and reliable...so many things to consider also with a device. We have to take into account things about Brycen that we aren't even sure about because he can't tell us! We commit ourselves to something that we think meets his needs and he can use, but what if we find out in a year that the other device's options seem to meet his needs better at that time?! We can't just trade it in and get a new one like you can a car or even a house!
We already made the decision several weeks go that we needed to go with a higher-tech device because of the "5 year rule" and we knew we wanted to meet with two different companies to view at least 2 different machines to make comparisons. Those were the easy decisions:)
I am getting so emotional and so stressed out over this decision...I keep crying when I think about the possibility of it not meeting his needs or of him getting frustrated with it to the point of causing him to regress. I don't even know who I can share these feelings with because I don't know how many people really and truly understand how much this is affecting me. Even the two reps we have talked to don't have "personal" experience with choosing one. Our speech therapist has been wonderful to be at both of these appointments, to do her research, to ask amazing questions that I would never have thought of by using her experience with other people/kids and devices. I'm crying just typing out this post because of how worried I am. Choosing something like this should make me feel excited and make me feel like I am opening up doors for Brycen that he doesn't have right now...so why do I feel like a failure as his mom when I am upset about it??
I do want to explain that both of these machines have wonderful capabilities to grow with Brycen! They each have pros and cons, they each are very visual for him, they each can be adapted somewhat to meet his needs and have some special features that we know would benefit him. The problem is that each person that needs a device is so unique and these companies do what they can to mesh that into one machine that could work for the majority of people. If I could take a few features of the first one and add that to a few features of the second one, then this decision wouldn't be so hard because I KNOW those are the features that would benefit Brycen now. But that's another problem I am having...what may benefit him now may not be the things that will work for him in a year or two! I have to take into account so many aspects of his life, the different situations he will use the device in, how easy is it for others like his teachers and my mom to use with him, will I get frustrated programming it (because if he sees me frustrated, then of course he will become frustrated), the fact he "sees" things in vertical not horizontal...so much to consider and of course there are those unanswered questions we have about what his next 5 years will be like and how much he will progress, so how much can grow with him! When I talked to Mike after the appt today, he immediately asked how did Brycen react to the machine today and that should help make the decision. I wish it was that easy...but unfortunately, Brycen was having an "off" day today. We noticed before even showing him the device that he was mellow, not verbalizing any sounds, didn't even run down the hallway like he always does when we head to the therapy room. The other time, he was happy, verbalizing a lot of sounds, using his few signs more, etc. On that day, he took over the machine and used it like he knew exactly what to do. Today, all he wanted to do was rub the smooth surface, push a few buttons, and then ignore it. I can't even let that help me make the decision since it was obvious his mood and abilities were completely different each day.
Just reading over this is making me cry again so I think it's time to finish this up. Below you will find links to both devices...unfortunately the links don't give you a real picture of how it can be used and what we will have programmed for Brycen, but at least you can see what I am contemplating. Thanks for "reading" me out! Again, I know this seems like it shouldn't take over so much of my emotions and thoughts right now, but this is a very, very difficult decision that pretty much affects Brycen's life for years and his ability to communicate. I just wish some there was some magical "sign" to tell me what is right for Brycen!

http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
http://www.dynavoxtech.com/products/maestro/features.aspx

Believing in Santa

How do you help a child with Autism believe in Santa? Aubree is starting to understand at 2 1/2 so we will start the whole Santa tradition next Christmas for her, but Brycen shows no concept of what we talk about. I know that visiting Santa at the mall will not probably be possible for him...he won't even go near family members and friends a lot of the time and he is deathly afraid of mask-like costumes!
I want to get a book over this next year to read to him (if he'll pay attention long enough), maybe enter a social story into his AAC device when we get it so it'll play out the Santa scenario for him, but since he is mostly non-verbal, how do I know if he gets it?
The other thing I worry about is that people with Autism are very literal thinkers, so I have read that they either start questioning everything about the Santa tradition very early on...or they are huge believers even until teenagers because they believe everything their parents tell them.
I want him to believe! The symptoms of Autism have already made him miss out on other childhood things and he's not even 5 yrs old yet! I don't want him missing out on this magical belief in Santa Claus! Those with experience and older children/adults on the spectrum, please help! Tell me your stories and I hope in a few years, I'll have a new story to tell by learning from yours!

Merry Christmas!!! Thank you for all of your support over this last year!
Much love to all,
Mike, Melissa, Brycen, and Aubree

Choosing an AAC Device for Brycen

We've had to change our plan with a device for Brycen since I last blogged about it due to the financial aspect of it. With Brycen's services, there is a hierarchy of who will pay for what and in what order. It is billed through our private insurance first, then put through to Medicaid, and then if Medicaid is at it's limit of paying for something, our Waiver services can help out if we have the money available in Brycen's name. It's very confusing so I'm not really going to do into detail on the specifics, but the summary of all of it is the device that we think is best for him right now will hopefully be too low-tech for him in a couple years and Medicaid puts limits on how often they will help pay for a device. We are still unsure if and how much our private ins. will pay because of the run-around I have gotten from them in the 3 calls I have made to them. So, despite my reservations about getting a higher-tech device for Brycen right now as I know how easily frustrated he is, as well as the short attention span he has, we really have no choice at this point. These devices can easily be thousands of dollars...so obviously far out of our personal financial reach so we have to rely on insurance to do what they can and just adapt to what they will pay for and how often.

Therefore, we are no longer getting the Go-Talk 9 that he is currently using in therapy sessions now and has responded so positively to. We had a meeting yesterday with a rep from Talk To Me Technologies and will have another meeting on Monday with a rep from the Dynavox company. They each carry different devices that are very similar, but we want to make sure we are considering all of our options since this obviously is not a simple decision. While I am absolutely ecstatic about taking this next step in helping Brycen with his communication skills, it is also frightening and stressful as I worry about making the wrong decision and I worry also about building too much hope into the device. Don't get me wrong...I know the research supports how much these devices can help in so many areas of the child's life, but being that there is no one right device or one right answer on how to help kids with ASD, I feel like I am reaching for something with a very fragile mindset.

Anyway, I wanted to share a link to the actual device we introduced Brycen to at the meeting yesterday.
http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
I loved it! My experience with devices has been with the basic low tech Go-Talks as well as the older style, big computer like devices over the years. It is amazing what they have recently came out with that you can really tailor to the child's specific needs and day-to-day things. The devices we are currently looking for need to last him at least 5 years, so we want it to be able to grow with him from pictures, to words, and be something he can use to do homework with. So if he is still having issues with verbal skills in a few years, we can sit at the table with him with the device, ask him a homework question, and he can spell out his answer!

Now, I'm sure you are all waiting for me to tell you how Brycen responded to it...and I'm sure the suspense is killing you because it really killed me for the last couple weeks since we set this appt up! It was so unbelieveable that I had to call Mike at work right after the appt, which I NEVER do! I usually just wait to fill him in on updates from Brycen's appts and school stuff when he comes home, but this was far too amazing to not share right away.

Brycen LOVED it! He actually came over and just grabbed it out of her hand when she was showing me things. He set it down on the table, and pushed a couple buttons to see what it would say. This is the same reaction to the Go-Talk that he had...like he needed to just feel it out first and see what it does by pushing all of the buttons. What I think really surprised him is when he would push a category button, a bunch more pictures magically appeared and he looked up with a smile like "this is pretty cool." Without any prompts or pointing to show him, he pushed on the "toys" button on his own, found a picture of a "ball" on the next screen, pushed it and heard "I want to play ball." He then smiled and went over to the ball to play with the SLP. He came back over a little while later while we were talking, grabbed the device again, found the toy button on his own again, and then pushed the "swing" button and the device said "I want to swing." So then he went over to the swing and did that for a little bit! Not only did he seem to be curious about the device, he figured out those steps without us even showing him just by looking at the pictures and trying it out! He also followed through with the choice he made which is something we have been working on with him.

Now the big news is we decided to try out the "I'm hungry" button and we programmed in two different snacks we had available for him to choose from. He did the same thing as before just by us pointing to the "i'm hungry" button first. After a few minutes of snack, he went back to the mainscreen on his own, found the toys again and communicated through the buttons that he wanted to swing again. Then after swinging, he came back, found the "I'm hungry" on his own and went to the snacks again.

I know this probably doesn't give you the best picture of how it all played out...but take it from me, that I was absolutely amazed at how interested he was in the machine and how he pretty much taught himself those two things! I, of course, had tears in my eyes! If we can accomplish all of that in one hour, imagine what the possibilities are once he has a machine to use every single day!

Brycen's Path to Communication

"Our patience will achieve more than our force." Edmond Burke

When Brycen turned 2 years old, he had about 40 single words and several 2 word phrases. He knew multiple signs and could communicate to us what he wanted by pointing or leading us to it if he didn't already have the words.

By the time Brycen turned 2 1/2 years old, he only had one word left "ball." Ironically, this was the first word he ever said when he was about 12 months old. Despite starting speech therapy a couple months before, he continued to lose. We didn't get it...how can a child all of a sudden lose all of these skills? Of course, there were more signs and symptoms that popped up over those months too.

Just before he turned 3 years old, he was diagnosed with Autistic Disorder, specifically regressive from a clinic. A month after he turned 3, he received his "official" diagnosis from the team at U of I Psychiatry Department. Along with Autistic Disorder, he was given a dx of mental retardation due to his cognitive skills being so low when tested.

Fast forward to almost 4 1/2 years old...after 1 1/2 years of special education preschool, 7 months of speech therapy outside of the school...and he really, really struggles in communication. To date, he has quite a few sounds and word approximations, has been retaught a few signs, but all of this typically needs to be prompted by us. Rarely, do we hear an approximation coming from his mouth on his own.

About a month ago, the SLP at the clinic here decided to focus more on a communication device during therapy appts. We were amazed at how fast he caught on! It was like he was just waiting for this device. The SLP warned us that sometimes it seems like a child with autism will "forget" their current signs and word approximations if too much focus is put on the device. So she wants to make sure to keep using all of it during appts and outside of therapy to ensure nothing is "lost" again.

3 times over the last week or so, the SLP has been so excited to share with me how much she thinks the Go-Talk is actually increasing his verbalization. She says she notices more sounds coming out, more trying, and more imitation when asked. His teacher has also written more notes over the last few weeks saying they are noticing more sounds/imitations also, as well as we have noticed it too. This itself was absolutely exciting and has paved the way to getting his own communication device soon!

The most recent excitement came yesterday though! If I wrote it all out in sentences, this post would probably double in length because of how much we heard from him...so I'll shorten it a little. For those faithful blog readers, they will definitely be able to understand how much progress this is from my past posts about his communication (or lack thereof).

• He said a word approximation for "grandpa" twice-once outside with grandpa and grandma, and then later in the evening when we were talking about grandma and grandpa going back to their house. NO PROMPTS!
• When G'ma & G'pa were leaving, Grandma mentioned getting a hug from him and he said "hu" with NO PROMPTS! This is actually one we have NEVER heard before!
• When they were walking out the door, they said "bye" to him like always. Uusally, we have to specifically ask him to look at them and tell him to say "bye," but he immediately responded saying "bye" to both of them, also looking at each of them with NO PROMPTS!
• During bathtime, he held the toy turtle up to me and pointed to it, making his sound that means to tell him what it is. When I said "turtle", he immediately verbalized "tl" with NO PROMPTS. This also has never been heard before.
• I asked him if the water was getting cold, and he responded by putting his hands on his arms and pretending to shiver (which he does off and on before this) and then also said "co" with NO PROMPTS!
• While tucking him into bed, I told him "night-night" like always, and he responded by saying "n-n" with NO PROMPTS!

So far today, I have heard word approximation for "OK" when I asked him to get down from the back of the couch (his most recent place he thinks he needs to sit), as well as saying "cu" which means "thank you" with NO PROMPTS when I gave him a cookie for snack. His sister did say it first, so it probably helped remind him to use his manners, but he needed no direct prompts from me!

This is amazing progress for him and I really do think our patience is paying off! Just like the quote above says, patience will definitely achieve more than forcing him to try. These are a couple days where something "clicked" in his head to help these things happen. We've had days like this in the past, but not with this many words/sounds in a short amount of time...and he always seems to "lose" what he briefly showed us that day. It seems like he hasn't lost the will to try though today and I can't wait to hear what else he says today!!

15 minutes after finishing this post: Well, the above video proves he's on a roll again today! I can tell he was really concentrating and though it takes him awhile to respond to a prompt from me, it came out so clear!!!

SAVE THE DATE! 2011 Iowa Walk Now for Autism Speaks

June 11, 2011: You will find our family in Des Moines at the Iowa Walk Now for Autism Speaks event!
Please join us by clicking on the link below and signing up as a walker. Please also consider a donation when you are able to. This is a great organization that funds much of the research you hear about lately!
We battle Autism every single day with Brycen, but this day is very important to our family to show our dedication to our "Autism family" and to be there showing that we continue to have hope in what the future brings for Brycen and all others affected by an ASD.

http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=5CC908D83DA04F6CAA99024490B70681&team=4010797

Emotional Tidal Wave

The last week has been very emotional for me. My paternal grandmother passed away and though it was "expected" and she is in a far better place now, it really makes one think about life and what you want from it.
Brycen did fabulous at the funeral home visitation and at the funeral itself. We were very uneasy with taking him as we never know how he will respond to various events, but I knew I had to have him there with me. I'm a little puzzled at how he could handle so many people at one time, the noise level, the new places, and the change in routine so well these two days, but other days he can be overwhelmed by just having two extra people in our home. One thing I have learned with Autism is that you just never know and won't until you try. I'm not saying the next time we have to attend a funeral will go as well, but all that matters is it went great this time and that really helped decrease my stress level. We just prepared him as much as we could with a bag of favorite toys and snacks, keeping him out of the busy areas, and going over many social stories on the way to each event.
The emotions of death in general came over me and just like most people at funerals, they begin to think about their own mortality and how it will affect their family. My grandparents had 8 children and all are still living and have their own families. There were many pews filled with the family in front and throughout the service, I kept looking around and wondering about how my kids will do at my funeral and if they will have families to surround them and help them through. It makes me sad to think that Brycen may not have that.
Before I go on, I want everyone to realize that I have kept these feelings in all week and it's taken a lot for me to decide to share these. At first I felt selfish for even thinking about my own mortality when I am grieving my grandmother. Then, I felt like it was best to just not think about any of it because I don't have control. My most recent feeling is that I am sure there are other parents of children with disabilities that also have these thoughts, and since this blog is supposed to be my way of sharing how certain things make me feel, I felt I needed to share this. I am writing all of this with trust that I won't be judged for these feelings and that this doesn't cause people to start commenting about how I just need to have hope and think positive. I do have hope...I have hope now that I never thought I would ever have when he was first diagnosed. But even with hope, a parent still has the right to wonder and worry about future events.
So, all in all...the emotions of not knowing if Brycen will have a family to hold his hand and comfort him through all of that is overwhelming. In Aubree's situation, the ability to have a family of her own is higher than Brycen's ability at this point. Yes, I know they are only 2 and 4 and so much can happen before those years are upon us. At this moment though, it worries me that the person holding Brycen's hand through that day will be a paid staff. Nothing against paid staff because I have been one for many, many years and the individuals that I worked with in the residential settings became like family to me. I know paid staff are a very important part of a disabled person's life...they help them take charge and conquer their obstacles, they give support to learn every day tasks, they are vital to a person who needs residential care. When I looked at the 8 families in those front pews, I also began to wonder if I was doing a disservice to Brycen and Aubree by not having more children. I know I have blogged before about how I feel like Aubree will have so much pressure as being the only sibling of Brycen as they grow up and maybe when they are older if she so chooses to be in line for guardianship and such. I know we aren't having more children and I know we are content with that decision, but I still wonder how that will affect the kids either when we are gone or when they are forced to make very serious medical decisions for us as we age.
Wow! I do have to say I feel much better after writing that all out. Though a couple other things are on my mind, those are much more personal to myself and to those people that they are about, and I will just leave it at that. I just want those that are choosing to be a part of Brycen's life and helping us through these ongoing emotions know that they are a vital part of us being a family and in Brycen's progress. Quite a few people have come a long way in trying to understand how our lives are different and to understand the obstacles that Brycen faces daily, and we are so grateful for this.